Coping with Mom going into long term care. Any advice?
I'm new here. My mom is only 70 and just moved into long term care. Up until 2018 she was still working as an RN, doing 12 hour night shifts. It's a long story, but because of a benign brain tumor( meningioma) that was first diagnosed in 2007 that she stopped following up on, and then grew again in 2021, she has had a rapid decline in her physical and cognitive ability. She has gone from a completely independent woman in her own house to someone who can't take care of herself. She has poor judgment related to the tumor location. It was removed and doing better but then had radiation which brought back the symptoms, which are similar to early dementia. She was at home and falling pretty much every day. Falls have never been unsual for her because she has untreated ADHD and is very clumsy and she was always an expert at falling without getting hurt because she did it so often her whole life. The difference before this happened is she could get back up on her own and now she can't because she isn't able to motor plan. I tried every possible thing I could think of to keep her safe and in her own home, but she is also an expert at not learning to compensate for any deficits she has. We got her a Lifeline, but EMS was coming to her house almost every day and I felt terrible about that so I finally brought her to my house, which is a whole other story, but I spent 35 years of my life living with her because of guilt and I got married at 35 and finally got out and I can't give any more of my life to living with her. She is also a bigger woman so I can't lift her when she falls and my husband works and isn't always there to help. And even WITH people there she can still manage to fall. She fell about 8 times the first 10 days in the nursing home because she didn't ask for help to get up. I'm an only child and she is a single mother and she has untreated trauma and mental issues and our relationship is very complicated as a result. She smothered me. I love her and want the best for her though and I tried so hard to make her better so she could go to independent or assisted living. She was getting OT and PT at a day institute. She got Covid in December and was hospitalized and I asked for rehab at the nursing home she is at now because it is also the place we had chosen an assisted living apartment for her. It's a good one as far as nursing homes go and she has received good care. It gives me peace of mind to know she is not falling every day now (she is better about asking for help to get up now) and is eating regular meals, and getting her meds and is in a clean space. My ONLY complaint is she will have to apply for Medicaid once her assets are spent and so she is in a shared room. And her side of the room is TINY. It's bothering me so much because I can't make it more like home for her.. She has a lift recliner we just bought before we knew she couldn't go to assisted or independent living but with the bed and the wheelchair she is now in it just won't fit and I am sad. I know I'm rambling but this is so hard to wrap my head around.. She always seemed young for her age and she is still younger than most of the people in the NH but now she is in worse shape than some of them and it's just sad. It all happened so fast and I don't know how to cope with it some days. I am sorry this is so long. I really just hope to hear from some of you who have been through this. It makes it extra hard because of our complicated relationship and the guilt I have for putting her in a nursing home, and I have always felt responsible for her emotional well being even though she's never been happy.
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So you felt, even though you were dealing with a woman competent enough to make herself an RN, that you were responsible for her? And you felt, after 35 years of trying, that you could eventually bring contentment to your Mom?
And you basically gave up your own life until age 35, when you married and left?
You mention the word guilt. That word belongs to felons and evil-doers who purposely create torment for others, love doing it, and are without remorse. Does that sound like you?
Or is the OTHER G-word more appropriate? Grief perhaps? Are you grieving that your Mom is failing and cannot care for herself and that you feel inadequate (as she taught you to feel), to change that? Well, you are absolutely RIGHT in that. You can't change it. It's a brain tumor and it's here to stay. You can't fix it.
Mom is where she belongs. She is in a facility getting care. You will never hear from her that you were/are a wonderful daughter who "saved her". You are a human with limitations who cannot fix, who cannot save Mom's broken brain NOR her unhappiness.
You have married now. Your OBLIGATION now is your marriage and your husband's and your own happiness. You owe it to yourself and the man you married now to care for yourself.
I can only suggest you get counseling. Get a very GOOD counselor, not one who sits and listens to the same story over and over, but one who will shake you lose from habitual ways of responding to life that do not help you. It will be uncomfortable, I KNOW because at age 80 I have three times in my life, when desperate times hit, sought help. And changing our habitual ways of doing things, even knowing they don't work, is a hard habit to break.
I wish you the very best. Mom has had her life, and it sounds to have been a productive one if she loved her life as an RN as much as I did mine. She now is in care. Are you not at least deserving of a "shot at life?"
You have shown yourself capable of caring for another. Shown yourself capable of great understanding. Shown yourself capable of moving into a new life. Are you not able now to show yourself the compassion of getting help to keep moving on toward a happy and productive life?
I wish you the very very best.
Part of my guilt is that I am an RN myself, although I haven't worked in a few years and I feel like I SHOULD be able to care for her. But I do have a husband and son and a house and dogs and a life and when my mom is with us all we do is argue because of her lack of respect for my boundaries and SO many other things it would take days to even explain. I think just hearing from you and everyone else here has giving me what I need: permission to put myself and my family first and try to detach and set boundaries with her while still making sure she is well cared for her. She is in a good place and I'm happy with the care they are providing, and she loves the food which is really her only priority lol.
Thank you so much.
You have done all that you can for her, you appear to have a co-dependent mindset, cultivated over the years.
I would suggest that you seek out some therapy to get you on the right track, she is taking up too much space in your brain, it's time that you lived your life for you, not her.
You state that you are married, why not dedicate your time to your marriage, your husband, he is supposed to be your priority.
Take care of you!
I appreciate your advice. It is very helpful.
But now you pass the baton to her and her caregivers. You've done yeoman's work for all those years. You are not responsible for her happiness. You can't make her improve if she doesn't also want it. Count the blessings that she has an A+ daughter (and SIL) like you, that she's getting good care, and that the state is paying for it. I wish you peace in your heart! From another "only" with a single Mom (and retired RN) to another.
I try to be a good daughter to her and my husband has been so helpful to her during our 19 years together even though she hasn't been very nice to him.. He does it for me. I want HIM to be relieved of that burden. And I want our son not to have this stress. It's not fair to him.
Thank you for your kind advice.
My LO, now deceased, had a really lovely “efficiency” in a very nice AL, and we truly attempted to make it cozy, but when she transitioned, at 89, she had to leave an established home in which she’d been born, and which had been, in every detail, lovingly decorated with her very specific taste.
I took some things from her home and others were taken and sold, but it was I who was most impacted emotionally.
I did have some very good sessions with a cognitive behavioral therapist and they absolutely DID help.
You have described well how difficult her situation was when you realized she needed residential care, and I think as you see her begin to enjoy some of the benefits of her current life style that you will come to feel better, as I did.
Life being life, my LO was among the first to get COVID, and in our part of the world, that changed everything.
I did whatever I could for her, as you have done for your mother, and I remind myself of that often.
I found as time went on that my visits of a few minutes most days were a great comfort TO ME. Toward the end, I would kiss her forehead and say “I love you” to her, and just a few days before her death, she would whisper “I love you too”, and that was very rewarding to me.
Going forward, try hard to see some sense of balance between your care for her AND YOUR CARE FOR YOURSELF. Enjoy the things you enjoy in your life to the fullest. Try to keep your memories of her focused on the best ones, and let the “complicated” ones sink a little to deal with anther day.
YES, you ARE a good child to her.
Sadly, I don't think that person exists.
Life throws curveballs at us all the time, and it's especially tough to take when it happens to someone we love. That's when we realize we have to make the best of the new parameters life has set and not bang our heads against a wall we cannot move.
You mom's situation is sad, but she's now safe, cared for, and doing better than she has in a long time. I'm going to assume that the room she's in is not her entire world and that there's a common room somewhere in the facility where she can spend most of her waking hours. Don't obsess about the size of her room -- it's where she'll sleep for the most part, and for now it's enough.
This situation is a kind of loss, because Mom's not who she was not all that long ago. Most people don't decline and die quickly -- they go downhill in stages. This is one of those stages, and there will be another, and another, and another as time goes by. It's life, and there's very little we can do to change that course.
Let yourself feel sad, but you've done nothing wrong. In fact, you've done it 100% correctly. You've ensured her safety and her care. You're a good daughter.
My Mom was only in her room to sleep. I had requested she never be left alone in her room because it upset her. She was in the common room all day. She had a wheel chair she was able to scoot around in. It reclined so she could take a nap in it. She had her meals in the dining room and was able to be involved in some of the activities. She enjoyed watching other people. She liked the entertainment they brought in.
Just be there for her. Visit when u can. Be her advocate but do it nicely. You want the staff on ur side. Things will not be done the way you did them. Learn the aides schedule so you know what their responsibilities are especially in the mornings. My Mom was without a bra a number of times. She needed it because skin on skin caused a yeast rash that was hard to get rid of. I would ask my RN daughter, who worked in NHs, what I should complain about. She asked me where did I put the bras, in the drawer with her socks. That was the problem, aides dress from the top down. By the time Moms bras were found, she was all dressed. I was OCD and hung Moms clothes in sets. Started hanging a bra with it and no more problems. Asking is better than accusing. And some things you need to just let go.
She still sees me as her main support and calls me a lot with every grievance and I'm trying to make her see that they are there to help her. It's an uphill battle but I'm trying.
I can't believe all the extremely helpful answers from all of you and I appreciate it so much.
Wishing you peace as you continue to advocate for your mom.